The Next Right Thing

I wrote the below a couple weeks ago as I considered the future.  Tomorrow I return home for the first time since I left for Tiffany’s memorial service in CO.  I have spent the last couple of weeks with Tiffany’s parents in CO and my family in CA. As I look forward to the next couple of weeks, I am sure that I have some tough days ahead, but I also know that God’s grace is sufficient.  I must be willing to do the next right thing.

I find myself in a very interesting and difficult time right now. It has now been two and a half weeks since Tiffany died, and i am still working through it all.  I have a feeling that this is going to take awhile! So the question is, what do you do now when God in His divine plan chose to take the love of your life home? You simply do the next right thing. I have decided that I don’t have to have all of life figured out, and I don’t have to make a whole bunch of decision -- I simply need to do the next right thing -- that which honors my God, that which is wise and prudent, and that which keeps me focussed on my God.  Tiffany and I had many times when because of health or just simply because of life, we had to choose to just simply do the next right thing. We could not see far enough ahead or the circumstances were just changing too quickly. So what specifically is the next right thing for me -- it is taking the time to work through Tiffany’s death, collect myself physically, spiritually, and emotionally so that I am prepared to go back to “normal” life the beginning of January.  It has been good for me to be away although it has been very hard at the same time. God has used my time away to do His work in my life to prepare me for this next stage in my life. 

Friday Fill-in

Friday Fill-in was one of Tiffany's favorites -- usually just some random or humerous thoughts --

Sunsets in CO are beautiful -- the wide open plains with the mountains 90 miles away make for some gorgeous scenes -- they remind me of my wife.

I still really, really enjoy doing things for Tiffany.

There is nothing quite like decorating for Christmas on Christmas Eve.

The simplicity of white lights as the only decorations on a tree create a great environment to stop and remember.

This One Breath -- what to do with it?

I have thought much about what to do with the blog that Tiffany began earlier this year. She had been challenged by a good friend to write and to transparently talk about her life with a chronic disease like CF and just about her life. Tiffany started writing and then took a break to evaluate what she was doing.  I remember sitting in our loft and talking about the reality that if the blog was going to work, then she simply had to be more transparent -- it was her life and how she biblically handled her life situation that was going to have impact on people’s lives. So that began a process when she started to transparently share about her life.  For the last 10 months she has been sharing about her life with many of you. The reality is that telling Tiffany that she needed to be transparent was a whole lot easier than me being transparent. Although I don’t know entirely how I will use the blog, I have decided to keep the blog going.  Here are some of my present thoughts on how I will use the blog.

1. Continue sharing about life with a chronic disease -- although it will not be as effective as the person who is going through it, the Lord gave me a front row seat into someone’s life that had to deal with it.
2. Share about the reality of losing your love, your best friend, your wife, and your constant companion.
3. Share what God is doing in my life.
4. Share some of Tiffany’s writings that never made it online -- some things were too personal or were written in her paper journals or were written long before blogs existed.

I would love to hear from others on how you think this blog should be used or how it would be helpful in days and years ahead.

Another Blessing

Last night was a great privilege to go to the Chandler Children's Choir concert. I am over in CA with my parents and found out this week that they were dedicating last night's and tonight's performances to Tiffany.  Tiffany had played the piano for them for the last year and a half.  So yesterday, my dad and I made the 7 hour commute over to Phoenix went to the concert and then came home afterward and got home around 2 a.m.  The kids did a phenomenal job.  Tiffany would have enjoyed the concert so much. Here is a song that they recorded earlier for us as a family with Tiffany's home going.  They sang it last night and is called Dona Nobis Pacem (God Grant us Peace).  Thank you CCC for dedicating these performances to Tiffany and for all your support that you have shown.

Real Gold Fears No Fire

Below is my tribute to Tiffany which was read at the two different memorial services in AZ and in CO. The complete booklet with many other things can be seen here. I plan in the days ahead to share more thoughts about the last two weeks. God is good!

Tiffany Leigh Davis Brock

1975-2010

“Real Gold Fears No Fire”

A Tribute to My Wife

by David Brock

Thirteen and a half years ago, I began a wonderful new adventure in my life when on May 30, 1997, I married Tiffany Leigh Davis. As I have looked back these last couple of days over our relationship, I have become even more thankful for the woman that God placed in my life. Four years before we got married, we met in fresh- man speech class at Bob Jones University. Our teacher Mrs. Waite started the class explaining what the class would entail and then she mentioned that the relationships formed in freshman speech could very well last a life time and that it was more than likely that some of those friendships would lead to marriage. Well, as a typical freshman guy, I took her suggestions to heart and began surveying my options and the competition in the class. Then, each of us freshman students had to give a quick impromptu speech about ourselves and what we did with our summer. When Tiffany got up and gave her speech, I was impressed—she was a gorgeous blonde, from the West, grew up on a ranch in Colorado, had experience with youth camps, and on top of all that, she played the piano. From that very first class period of speech class, I began a pursuit. I had a strong idea that Tiffany would be a woman that would be able to stand with me in ministry and life. I will never regret that pursuit. A year and a half later, we started dating. (Our fist date during that first semester of speech class did not go well, so I waited another year before I would ask again.)  

Right after Tiffany and I started dating, my parents came to visit at the college; I stayed with them at the guest room, and they had a “little talk” with me. They told me up front that I had better not mess with the emotions of this girl, and that if I wasn’t serious and wasn’t willing to make the sacrifice of being married to someone with Cystic Fibrosis and face the reality that I would probably be a widower early on in my life, I should stop the dating relationship now and not hurt Tiffany. My internal response screamed, “Wait a second! You’re supposed to be on my side!” In reality, my parents were on my side as they were trying to protect Tiffany from being hurt and me from not counting the cost. I spent the next three months asking myself if I could love Tiffany the way that I needed to love her and if I was willing to be a widower at a young age. As our relationship grew, I found I did love Tiffany; and I decided that just a couple years with Tiffany would be worth any cost. From Tiffany’s perspective, she was trying to decide if marrying me would be fair to me. You see, she was living the Cystic Fibrosis life and knew the hardships that were involved. I am so glad that she said yes to me! 

We got married twenty-seven days after our college graduation. Little did I know then of Tiffany’s depth or the complete privilege it has been to serve next to her for thirteen and a half years. We have been through many trials and difficulties: many of which no one but she and I know, and we have been made better as a result of those trials. You see, Tiffany was not defined by Cystic Fibrosis, but yet it helped shape her to be the woman of God that she was. When you live in light of the fact that you are going to die soon, you live life much differently. She did not live a life for herself, but rather, Tiffany lived a life for her God seeking to please Him with her life and responses to what God had placed in her life.

When I think of my wife, I think of these things.

1. Friendship – From the start Tiffany wanted our marriage to be a wedding of best friends. I can definitely say, I married my best friend.

2. Passion – Tiffany’s passion for God, for me, for her parents, for her brother, and for her future sister in-law burned deeply in her heart; and those passions extended to those she interacted with day after day.

3. Faithfulness – I am thankful for Tiffany’s faithful dedication to our marriage, life, work, and family. And I am thankful she faithfully fought for her health.

4. Perseverance – When Tiffany was healthy, she would have to spend four to six hours a day on daily treatments. When she was sick, she would spend all day trying to get healthy with treatments and rest. When she graduated from ASU with her Master of Music, she was on IV treatments from a recent hospital stay. We did an IV treatment on the way to graduation in the car; she unhooked herself, and then she went and marched in graduation. I lost count of how many recitals, performances, and concerts she played for while being in the middle of an IV treatment.

5. Always Learning – Tiffany loved to learn. Even this semester she was taking an online class in Finale, a music notation computer program.

6. Gracious – Tiffany always had a kind word even for those that would sometimes hurt us in ministry.

7. Simple Elegance – Tiffany dressed, decorated, and lived with a simple elegance all her own.

8. Eclectic – It was hard to peg exactly what Tiffany liked as she liked such a wide range of things, but the eclectic always had a purpose: “It makes me smile” would be her answer each time something new but possibly a little strange would show up in our home.

9. Forgiving – Being married to me gave her much practice in this area, but she was always ready to forgive.

10. God Dependent – Tiffany filled her heart and mind with Scripture and looked to God to get through the emotional and physical trials that come with living with Cystic Fibrosis and being married to a pastor.

11. Child of God – When she was seven years old, she placed her faith and trust in Christ not depending on any church, work, or personal goodness but rather in Christ’s death on the cross to give her eternal life which she is enjoying today. Tiffany’s identity was and continues to be that she is God’s child. Because of this truth, I find great hope and comfort in knowing I will see her again.

12. Patience – Even when she wasn’t feeling well, she was so patient. I remember a night in the hospital when one of the CNAs was emptying trash on the pod, and you could hear him coming as he would go into a room at 3 a.m. and empty the trash in a very loud way. One night after we had endured this a couple nights in a row and he came in and started making a racket in our room, I sat straight up in my cot that was next to Tiffany’s hospital bed and was about to give him a piece of my mind when I felt Tiffany’s hand on my chest. She was saying, “It’s okay David, go back to sleep.” We had many “it’s okay, David” moments in our marriage! She taught me patience.

13. Loving – Tiffany sacrificed of herself for me, her family, and those around her even when it cost her health and strength. She chose to love and give of herself. She lived in the moment by loving at that moment.

14. Excellence – Tiffany practiced her piano for hours upon hours so that she would be effective at facilitating worship, accompanying, and teaching. She gave 100% to each and every opportunity.

15. Thankful – Complaining wasn’t something I heard from Tiffany; and even at home in the middle of doing all her treatments, she expressed gratitude for the life and family that God had given her. She would thank everyone in the hospital for how they would help her whether it was cleaning her room, taking blood, or the numerous visits from a variety of doctors and nurses.

16. Humble – Tiffany was always thinking of the other person and would not want to inconvenience anyone. This humility that looked out for others came from her dependence in a God Who she knew looked out for her.

17. Musician – Without a doubt, Tiffany loved music and loved being able to com- municate through music. She essentially became an expressive extrovert through her music and would go back to her quiet introvert when she was done playing. Her most expressive faces shone brightly when she was able to communicate truths through the music so

that those truths would penetrate the listener’s ears.

18. Partner – I often say that Tiffany authenticated my ministry. She was my job security because if you guys got ridof me, I would take her with me! And frankly, since no one wanted Tiffany to go, I always had a job. Both of us grew up in the West surrounded by cattle and horses and western- themed lives, so we understood the concept of “being a good partner.” Tiffany was just that: my cowgirl and my “partner.” Come branding time at the ranch, she and I made pretty good flanking partners.

When I think of Tiffany’s focus in life, I think of these things. They are qualities of a life well lived. But more than all of these qualities, when I think of Tiffany, I think of my God. Tiffany endeavored to reflect Christ in her life on a daily basis, and I couldn’t help but see God in her each and every day. The depth of Tiffany’s personal walk with God was even greater than I knew as I have begun to look through her personal journals. She was so in love with her God and desired to serve Him with her life and to be faithful to the end. She was completely dependent on God to face the trials of life and to give her the grace that was needed.

The last challenge that Tiffany gave me came after she had been moved to ICU. She had gotten to the place where talking was too hard and was taking too much energy so she was using sign language which I did not know. Finally she took a deep breath and said through the BIPAP mask, “Hope in God.”

What does it mean to hope in God? It means that I can place my confidence in an all-mighty God Who will perform His promises in my life and will be the Sustainer of my life. It means that I have confidence that because Tiffany repented of her sin and accepted Christ as her Savior, I will see her again in Heaven. It means that no matter what comes in life, even the death of the love of my life and my best friend, God can and is to be trusted and loved. Having hope in God means that my confident expectation must be in God and God alone. I hope that you will join me and accept Tiffany’s challenge: “Hope in God.”

My mom would often say that she didn’t raise me to be a bachelor. She said this not because she pressured me to get married, but that simply my predispositions in life were not conducive to the single life. I told my parents Wednesday night hours before Tiffany went home to be with the Lord that although they did not raise me to be a bachelor, Tiffany has spent the last thirteen and half years preparing me to be a bachelor. Our life verse for our marriage was Proverbs 3:5-6 which says that we must trust in God with all of our heart and then depend upon Him to direct our lives. Tiffany lived that life of trusting God for the future, and we are content with God’s design for our life. Thank you, Tiffany, for being my love, my best friend, and God’s agent in my life to prepare me to be better for His service. I love you mountains and mountains, oceans and oceans, and valleys too!

Tiffany's Memorial Service

Praise Update

Dear Family and Friends,

For the last couple of weeks I have been asking you to pray for Tiffany and her health.  Praise God that we no longer have to pray for her health as she is worshiping our God face to face. Last night about 11:45 God quietly took her home to be with Him. She was ready and had been getting me ready for this time for awhile now. What a blessing that she no longer struggles with getting her breath or has to spend countless hours in therapies. We had been praying that God would give her new lungs and He did better than that and gave her a glorified body. This last Sunday she told me that going to heaven would be a cool birthday present as her birthday is this coming Sunday.  I told her I couldn’t compete with that gift.  You see, I was going to give her a really nice dress watch that measured time, but because of her faith in what Christ has done for her on the cross, God gave her the gift of eternal life.

The last couple couple of days have been so sweet. To watch someone who is ready to meet her Creator comfort those around her and look forward to Glory is a beautiful thing. What a grand time we had as we worshipped God (it was a joyful noise in there at times with an emphasis on noise, but Tiffany was always more concerned about the heart than the talent). Her whole family was here by Tuesday night, and we just had a good time as a family with Tiffany.

For almost 10 years, Tiffany has been on the prayer request section of our church bulletin for her health, and God has answered our prayer. Now we no longer have to pray for her, but now we can praise God for how He answered prayer, and how He worked in her life. This is how we can praise God:

1. that God gave her better lungs than UCLA could give by giving her a glorified body.
2. that God preserved her life till all her family came and gave her the strength to give a very sweet time together as a family.
3. that God provided excellent medical care with people who were professional, competent, and compassionate.
4. that God loved her more than we could ever love her.
5. that Tiffany accepted Christ as her Savior as a seven year old girl depending on Christ to forgive her sin and give her eternal life.
6. that God strengthened Tiffany and me and her family in the grace of Christ Jesus our Lord.
7. that God gave us as a family a sweet time of fellowship and encouragement.
8. that Tiffany’s testimony was untarnished and pointed people to Christ to the end with the medical staff and those all around her (even the last day she was thanking medical staff every time they would come in and do something even if it caused her pain).
9. that God was glorified by Tiffany’s life and by her death.
10. that God’s grace is sustaining me today, tomorrow, and through the next couple of months.

Thank you so much for your love and support to Tiffany and I through these last couple of years and especially through these last 3 months. God has been so good to us and to me by giving me a wife that loved me passionately and more importantly, loved God passionately. As Tiffany challenged us -- Hope in God.

With love and appreciation,

David Brock

Prayer Update on Tiffany

Dear Family and Friends,

We are through another day rejoicing in the grace of Christ Jesus our Lord. I am so thankful that we do not have to go through this on our own but that we have a God who is in control, strengthens, and gives peace. What a blessing it has been to hear from so many people!  Tiffany had fun last night reading emails, blog posts, and looking at all the facebook posts.  Thank you for continuing to encourage her!

Yesterday actually went much better than we had thought that it would go, and we have avoided the ventilator which is a huge blessing. Her numbers held steady throughout the day, and we saw some improvement with her breathing although it is now harder for her to breathe without the BIPAP. She has done well seeing that they did not start the new IV treatment plan till yesterday afternoon so the next couple days will be critical in seeing how her body responds. She slept well last night for which we are very thankful! Today will basically be just continuing the IV treatment and continuing with her respiratory treatments.  They may also take out her PIC line due to the MRSA infection which means they would adminster the drugs through perefiral 

It has been an amazing thing to watch someone in such difficult health situation simply be content with God's plan for her life. Early this morning we were talking after one of her treatments and this is what she told me -- "Hope in God." We have a confident expectation in what God is doing in her life and our life together.  Our Hope is not in a Dr. or even in her ability to fight this infection -- it is simply in the King of kings. What a great God we serve and what a blessing to watch Tiffany hope in God and then encourage me to Hope in God.  So I pass it on to you -- whether it is with Tiffany or your own life situations -- Hope in God!

Here is how you can pray today -- 

1. If they take her PIC line that her veins would handle the IV drugs through the peripheral IVs. This would help her body be able to fight the infections for a couple days and then put in another central line.

2. That God would give her body strength to fight the infections as the drugs start working

3. That we would be strengthened in the grace of Christ Jesus our Lord

4. That God would give family a sweet time of fellowship and mutual encouragement

5. That God would use Tiffany's testimony to the medical staff and others

Here is how you can praise God with us today --

1. Good sleep last night.

2. She has been able to continue eating

3. She is not on the ventilator

4. That we have a God we can place our hope in

Once again, I can't express my gratitude enough for the outpouring of love and support. We serve a great God!

Hoping in our God,

David and Tiffany Brock

Prayer Update for Tiffany

Dear Family and Friends,

We would covet your prayers at this time.  Last night about 2 a.m. we made the decision to have Tiffany taken to ICU because her breathing worsened and the infection in her blood has come back.  The present theory is that the MRSA in her lungs is reinfecting her blood with MRSA which then takes a toll on her body and makes breathing very hard.  The decision to go to the ICU was initially made as a proactive cautious choice but as the day has progressed it has proven to be a good decision as things have worsened. She is breathing with the assistance of a B-pap machine which helps with the inhaling and exhaling. At this point she seems to be responding well to that extra help.  This afternoon we will see how she is doing but the next step is to put her on a ventilator. The reality is that the prognosis is not good if she goes on the ventilator due to the major infections.  They have started her on a cocktail of antibiotics to address all of the infections.  We should know in the next 24 hours how her body is going to respond to these treatments. As I write this, she is resting quietly.

Tiffany is actually doing pretty good emotionally. She is content with God's design for her life. We are simply resting in God and His perfect plan. Please pray that God would accomplish His plan in our life.

Here are some specifics you can pray for -- 

1. That her body would respond to the drugs positively and we could avoid the ventilator.

2. That we would be strengthened in the grace of Christ Jesus our Lord

3. That God would give safety to family who are traveling in.

4. That we would have the peace of God.

5. That God would accomplish His perfect plan.

Here are some things to praise God for --

1. The decision to come to ICU was made at a non crisis time which is enabling better care today

2. Tiffany's Mom stayed here after she and her husband visited for Thanksgiving

3. That God is God and we are not!

Thank you for all of your love and support. 

David and Tiffany Brock

Tiffany Hospital update 11-27 by DH

As many of you CFers out there know -- hospital stays can be hard and drawn out much longer than you would like.  I think that is true of this one. We were not anticipating being here this long but I guess we must simply rest in God's timing in it all.  Her lung functions were down to 22% which is a drop from when she went in to the hospital. We have yet to get her transplant evaluation process rescheduled.  They told me they couldn't tell me till Dec. 8th when it would be scheduled, but I am not sure why -- I will probably write them and find out. The hard part now is patience because just when you feel like you made significant process your body doesn't cooperate. This is definitely a weird hospital stay that we are looking forward to be over. Below is an email that I sent out to family and friends today by way of update. I am going to try and post more often -- but you know how it goes in the hospital. DH

Dear Family and Friends,

As Thanksgiving has come and gone as an official holiday there is still much to be thankful for as we move forward. We were not able to go home for Thanksgiving, but I am thankful that Tiffany’s parents were able to come down for the week and to celebrate with us at the hospital.  A family in our church provided us with a meal and we feasted in the hospital room even with enough left overs to have a turkey sandwich for dinner.  God continues to give His grace in supplying strength, patience, and hope (confident expectation in God). 

It has been an interesting week and a half since the last time I wrote.  It seems that so much but yet so little has happened. Tiffany continues to make slow progress with some of the issues that I mentioned last time but especially with the C-Dif colitis.  We were hoping to go home by Thanksgiving but Tiffany’s body is still fighting so much that she has not regained the strength or lung function that is needed in order to go home.  It has been a hospital stay with so many ups and downs.  Just when we think it is getting significantly better, something else comes up. They have been very careful to watch for other infections and to this point we have not found any. It is evident that her body is still fighting infections that we assume to be the existing MRSA, C-dif, and pseudomonus because of the fluctuation of her white blood cell count and some fevers.  They did another lung function test earlier this week, and it has gone down since she has been in the hospital.  That is not surprising seeing all that her body is fighting, but we would like to see a turn around soon in her lung functions. 

Here are some praises -- 

1. No new infections have been found
2. We have received great medical care
3. Tiffany’s parents came for the Thanksgiving week
4. Tiffany’s mom is staying here helping for the next couple of weeks
5. opportunities for spiritual conversations

Here is how you can pray -- 

1. The infections be continued to be killed off
2. Increase in lung function
3. Re-scheduling of her transplant evaluation (we won’t find out till December 8th if we are able to do it in early January)
4. Tiffany’s body be strengthened 
5. Patience through the slow process

Thank you for all of your prayers and notes of encouragement. We continue to be amazed at the support that we receive from so many. You may be asking when will Tiffany get out of the hospital -- the answer is simply that we do not know. We are simply taking a day at a time, and when the time comes for her to go home, we will be grateful.

Trusting in our God,

David Brock

Friday's Review

Finally, a quiet day.  Tiffany has spent most of the day sleeping -- her nurse has been great and has kept people out and grouped all of his things together to allow Tiffany maximum sleeping time. Last night was a short night with many interruptions so sleep today was greatly needed. A quiet day in the hospital is a good day which usually means no new problems and no new treatments and that is basically the case for us today. They are adding one IV drug to her regimen to help address the colitis but that is all.

It was neat today to run into a couple of the folks who helped take care of Tiffany the last hospital stay. The lady who cleaned her room last time came by to visit and then I talked with a nurse aide in the hallway for awhile. Tiffany sure does make an impact on the people with whom she interacts!

Below is another letter that I wrote to friends and family giving them an update on where Tiffany is with her health.  It should give you an idea of exactly where she is -- I had meant to post it earlier but alas it did not happen. Looking forward to a quiet and uneventful weekend. DH

Dear Family and Friends

Well, what a week it has been! Tiffany has proven to keep the doctors guessing with plenty of theories and not much success at knowing exactly what is happening until the last couple days and even then some things we don’t know. Initially when we came in it was for things going on with her abdomen, hands/feet, and throat with some difficulty with breathing and a fever. At first they thought that it was all connected but now it appears that it is not connected and they found more issues in the testing process. In the past week I think Tiffany has had more tests than what she would care to go through again but that is all part of the process when you are not sure what is going on with your body. I think the most doctors we had in one day was 8 and most days we see 5-7 of them.  Yesterday, we had 5 all in the room at the same time. So the short of it is that Tiffany has . . .

1. C-Diff and Colitis (explains the abdomen problem) which is easily treated with antibiotics although it has progressed quite a ways
2. Perhaps candida in her throat (We have yet to get the final test results, but this is what they are treating)
3. Toxin release in her hands and feet from probably all the drugs she has been on over the year (this is simply a theory as they don’t know for sure what it is -- it is the same symptoms as reaction to chemotherapy which she hasn’t had last time I checked)
4. The new one that we were not anticipating is that she has MRSA in her blood. This complicates everything because MRSA likes to go to foreign objects and grow on them and then they go to the heart.  She had a TEE (this is where you swallow a camera and they look at the heart from the inside) on Sunday which ruled out MRSA colony on her heart valves. What it does mean though is that her port has to come out which is a big bummer.  She will then go through the treatment process over four weeks and then hopefully get another port put back in when her blood is clear of the MRSA. They will remove it Thursday.
5. Her breathing has become more difficult and her oxygen has had to be increased. They believe this is a result of the stress that her body is under as her lungs “sound” good.

The good news now is that we have a treatment plan and we are currently staying with that plan.  Last week it seemed like they were changing directions every day and had a new thought of what the problems may be.  One of the blessings in all of this is that we were able to catch the MRSA in the blood early on.  This actually can be a very serious problem and she wasn’t even showing signs of it when we came in to the hospital. God is good and is working in ways that we do not know!

Thank you for your continued prayer. If you would like, you can send a note to Tiffany and I know that would be an encouragement to her. Here is how you can specifically pray now.

1. That the treatment plan would continue to bring healing.
2. That we can get the MRSA totally out of the blood.
3. That we would be able to reschedule at UCLA for a reasonable time (looking for the beginning of January)
4. That we could get out of the hospital before Thanksgiving (possible but probably not likely at this point but God can intervene!)
5. The Lord is opening some doors of conversations with some of the medical staff -- pray that God would use us in their lives and that they would turn to the Great Healer

Thank you again for your love, support, and prayer.

Trusting in His Grace,
David and Tiffany Brock

Transplant Possibility

Tiffany is now without a port.  Everything went well with taking the port out this afternoon and now Tiffany is having a blood transfusion because her red blood cells were low. We are hoping now for a  quiet couple of days with extra sleep.  Below is a letter that we sent out to some family and friends a couple weeks ago and that we were going to post earlier before all this excitement. Here it is finally.

Dear Family and Friends

It has now been around six weeks since Tiffany got out of the hospital. It has been so nice to be at home and to be enjoying the new hardwood floors that many gave to and many gave of their time to install. It really has been a blessing while eliminating many of the asthma issues. We serve a great God who continues to supply our needs.  Thank you for all of your prayer support these last couple of months.

  

This last year has been a pretty difficult one for Tiffany with constant infections and not being able to stay off of I.V.'s for much more than a month at a time. This last hospital stay in August and September was a harder one because of the length and because of how low her lung functions reached.  While in the hospital we were able to have a number of good conversations with her Dr. and some since with the CF nurse. The Dr. encouraged us to start thinking about a double lung transplant.  With the frequency of infection and the duration of healing, we have reached that point. The last six weeks of being home has been a time of much prayer and research as we look at all of the issues with lung transplants.   

I know that we have many questions -- some we have found answers to and some we continue to learn about but the following are just some questions and answers that may better help you understand and pray.

How do you know when it is time to look at transplants? Basically when the infections become much more frequent and the duration of recovery continues to increase combined with a decreased lung function to below 50% -- kinda sounds like the last year. When the lungs have a hard time doing their job.

What are the survival rates of transplants -- 80% make it through the first year and 50% are living five years later

Will Tiffany still have CF? Yes, but she will not have lungs with CF so the treatment is much different.  She would still have the digestive, sinus, and diabetes issues because CF is genetic and affects more than just the lungs.  In fact, we would really have to stay on top of the sinus issues as that can be a source of infection with the new lungs. Because the lungs don't have CF, all the breathing treatments, poundings, and such would no longer be needed -- I essentially lose my excuse to beat my wife. :)  The reality is that she is exchanging one set of problems for another because once she has the transplant she will be on medicine that suppresses her immune system to keep her body from rejecting the new lungs.  

What is the process of getting a transplant? The first step is our research and making sure this is a direction we want to go. We have done quite a bit of research and spent much time in prayer and believe this the right course of action for Tiffany. Secondly, you have to choose a transplant center.  We have decided on UCLA in Southern California to start the process.  We have an appointment with them Nov. 15-17 when we will run tests and have many meetings. They give you a LAS (lung allocation score) that determines how high of a priority you are for receiving a transplant.  It considers many factors from the tests, to support, to long-term viability and other such issues.  The higher the number the greater the likelihood of receiving lungs. After they do all that testing, we will then find out if Tiffany will be accepted into their program and if she will be listed now or need to wait. If listed, you then wait for the phone call, and when they call, you drop everything and go. If she is not accepted into the program at UCLA then we will look at other centers.

What is the recovery time? This is largely dependent on how your body reacts to the new lungs-usually about 3 months that they want you to stay near the transplant center.

What will happen if Tiffany doesn’t get a lung transplant? The reality is that her lungs are getting worse and that the infections are taking more and more out of her. The end result is that she would eventually get an infection that her body cannot fight off. No one can say how long her lungs would last but once your body is weakened it is very easy for it to drop quickly. The Dr. has not given any type of time factor of how long she could live without a transplant as you just don’t know what infections may come.  The reason we are looking at transplants though is the reality that that time is approaching. Hard to work through but yet a reality.

So what is the next step? The next step is establishing a relationship with a center and starting the process of evaluation and getting listed.  We are wanting to be connected to a center right away.  They may say that she is still not ready for a transplant but it is much better to have an existing relationship with a center that is watching her as she could take a down turn any time. We are scheduled to meet with UCLA Nov. 15-17. If she is accepted and listed, then we simply wait for the call. 

How long will she be on the waiting list? There is no definitive answer on that. The factors included would be her LAS, blood type, body size comparison, lungs being available, and many other factors. It could happen very quickly or it could take a couple years. We have many questions to ask in this area at the appointment.

I write you all of this so that you can come along side of us and pray.  There is still much to learn and we are confident that God is in control.  Here are some specific ways to pray.

1. Pray that God gives us the emotional and spiritual strength to make wise decisions.
2. God can use this in the lives of others. 
3. Tiffany be accepted into the UCLA transplant program.
4. The appointment would go well and we would be able to learn more
5. God would accomplish His will in our lives.
6. God will be in and through all of the big and little details.
7. Be able to maintain Tiffany’s health that will allow all of the traveling and the transplant

Thank you for your continued love and support. 

Resting in His grace,

David and Tiffany Brock

update: Tiffany was not able to make the UCLA appointment although we are working at rescheduling it.

Tiffany Update

Ok. So we know it has been a long time since anything has been posted and a lot has happened since Tiffany last posted.  This will just be a quick post and then I will come back with some other posts that are actually emails that we have sent to family and friends over the last couple of weeks and that will get everyone caught up on where we are.

As I am writing this, I am sitting in the hospital where Tiffany has been for the last 10 days. We have a PICC nurse here putting in a PICC line as her port is coming out this afternoon.  We went in to the hospital last week because of a number of issues but while she was here, MRSA was discovered in her blood so she is currently being treated for that.  MRSA loves foreign objects so they are taking her port out as a precaution.

We are not totally sure how long she will be here, but we are hoping to be home for Thanksgiving.

Well, the PICC line is now in -- I will post again later.  DH

The Other Side by DH

Below are some of my notes from when I recently spoke at the CF Family Forum.  It was a great day of information and encouraging stories of how people are living with CF. What an honor it was to be asked to speak at it. I didn’t change them much for this post so it may seem a little chaotic. They assigned the following four questions to me. The post is a little long as was my little speech.

Hope and Perspective

1) What do you see as the biggest challenge for a spouse of a CF patient? 

--roles and which one I should be doing – what hat to put on

-husband, cheerleader, encourager, accountability, pusher, helper, nurse, respiratory therapist, financial, house keeper, cook

--watching the person you love slowly deteriorate 

2)  What do you wish you had known from the beginning (or earlier)? 

--the progression of CF... to better know what was coming

--how daily life issues affect energy (see spoon theory from earlier post)

--how to be a good advocate for her

--available financial help programs

3) What was the hardest learning curve about the financial stressors and insurance problems? 

Insurance

--that it simply takes time 

--need for documentation, and how to track everything – developing a system that works for you and that we both can work

--don’t assume dr.s offices and hospitals don’t make mistakes on billing

--be proactive

Financial

--how to adjust living based on whether or not she is bringing in an income due to illness

--hard to budget with an ever changing monthly cost with prescriptions and such

Know which questions to ask!!!!

Be persistent.

4) How do you cope with your feelings and emotions and take care of yourself?

Practical things and Life Perspective

Accept the reality of CF – it is chronic, it is progressive, you can do everything right and she will still get worse

Practical

--support of family and friends – build a support team

--taking quiet time and getting the sleep you need

--transparency with tiffany

Philosophy of life or life perspective

--keeping a forward looking view and not letting CF control your life but realizing it does influence your life

--having the right view of CF – not becoming angry about it – realize that CF makes her who she is

--faith in God and that He is in control

--because she has placed her faith in Christ, the worst that can happen is that she die and go to heaven 

My Help

Lately, I have had much to think through.  This Psalm has been a blessing.  

My Help Comes From the Lord

121:1 I lift up my eyes to the hills.
From where does my help come?
2 My help comes from the Lord,
who made heaven and earth.

3 He will not let your foot be moved;
he who keeps you will not slumber.
4 Behold, he who keeps Israel
will neither slumber nor sleep.

5 The Lord is your keeper;
the Lord is your shade on your right hand.
6 The sun shall not strike you by day,
nor the moon by night.

7 The Lord will keep you from all evil;
he will keep your life.
8 The Lord will keep
your going out and your coming in
from this time forth and forevermore.

The Other Side by DH

A Good Day

Have you ever thought about what makes a good day? Last Saturday would have been what most would be considered a good day for me. After finishing some meetings at the college, I was able to go over to Phoenix Children’s Hospital where they were having a family day seminar for CF. I had the honor of being on a panel in the afternoon where we shared our stories and gave insights into living with CF. What a blessing it was to hear from others who were going through many of the same things that Tiffany and I have been going through as we live with CF. 

One thing that I noticed about all the CFers that talked -- They are fighters and don’t allow CF to define their life. I had the privilege of talking with a lady and her husband who is about to celebrate her 3rd year with a lung transplant. To listen to her story and talk with her husband about what they went through was an encouragement to me. To be able to talk with families afterward was also exciting as I got to share more of who Tiffany and I are and how we face life with CF. As Tiffany’s previous post points out, life with CF is hard, harder than what people know as I think is true of most chronic diseases.

So that leads me back to my first question--Have you ever thought about what makes a good day? A good day is not defined by my circumstances but is defined by the fact that my God is God and I can trust Him with my all. In that sense, every day is a good day -- but the reality is that some are harder than others.

Progressive

I don’t know what I was expecting but this was not it.  I realize that I do have a progressive disease-that means that I will die from it or complications from it. I think that I expected to just at some point to get sick and not recover from it-to go quickly.  However, this is very different.  My lungs are slowly dying.  The past two days have been very hard.  I have been off of IV’s for almost 3 weeks and I am getting sick.  Coughing up crud, tired, really struggling.  

This is that progressive part.  It is almost as if your body is holding you hostage, laughing at you, because there is not anything you can do about it.  It is very wearing physically, mentally and emotionally.  There has been times this weekend where I have struggled with just quitting-wanting to stop the fight.  Now, don’t freak out on me that is not going to happen but it is something that I have thought.  

In the quiet hours, after coughing for 1 1/2 hrs and struggling to go back to sleep, when everything aches, when you just want some moments of relief-these are the times when progressive really hits home. I feel guilty for putting my DH, my family, my friends, my coworkers through this.  Although I know that many of them have chosen to walk beside me for this journey it doesn’t make it easier.  My brother is getting married next summer and I have told DH several times that I HAVE to be at his wedding (of course, the unspoken fear is that I won’t be). Don’t worry Brother....I plan on being there!

"My flesh and my heart may fail,

but God is the strength [rock] of my heart and my portion forever."  Psalm 73:26

Friday Fill-in

*It’s bad when words are mis-spelled in a tv commercial (hmmm)

*cheesy line of the week “If ear wax was made of your voice I would totally never use a q-tip”

*I enjoy that PBS has some really good concerts on it-I just have to find them :-)

Lord, my heart will choose to say, Blessed be your name.

“And he said, “Naked I came from my mother's womb, and naked shall I return. 

The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” Job 1:21

"Mom, why does she have that thing on her face?"

I am attempting to get out of the house more.  This means, of course, that the o2 comes with me.  This is a very new experience for me.  I have always been successful at “hiding” when I am not feeling well.  In fact, one of the tough things about CF is that most of the symptoms are internal.  CFers often look great on the outside.  Thus I had the benefit of often not looking sick.

However, this has changed with the fact that I now wear a nasal cannula for oxygen.  Internally, this has been a harder adjustment.  Many people in my life have been very gracious and insist that it hasn’t changed anything.  It’s hard to explain, but sometimes I feel like I need to over-compensate so that people see past the plastic tubing on my face.  I am trying to get rid of that “barrier.” When walking out of a store recently I overheard a daughter ask her mom, “Mom, why does she have that on her face?”  Or, at children’s choir rehearsal getting asked “are you okay....what is that on your face?”  It is almost easier to get the blunt honesty of children rather than the imagined questions of a look.

This has been a great reminder though that this tubing does not define me.  My CF does not define me. My circumstances do not define me.  My identity as His child is now firmly in His hands, defined and maintained by Him made possible through His grace.

Back at it...

It has been a blessing this week to get back to doing several things that I love.  

Chandler Children's Choir

Vocal Ease Voice Studio Master Class

Tri-City Baptist Church Worship Service

Fall

While temperatures here are unseasonably high (still over 100-ugh), I am ready for fall!  Recently I read about this pattern for fall paper leaves that I think I am going to have to try.

The pattern for these beautiful leaves can be found here.

Fall Paper Leaves

Another video

Here is another video. This is from the time I was doing graduate work at Arizona State University.  Enjoy!

Performance Excerpt

This is a video excerpt of the Chandler Children's Choir (this is one of the choirs I collaborate with) and guest soprano, Erin Morley at their Spring Concert in May.  Thought you might enjoy.

Excerpts from DH update

We are now ending our 6th day at home -- and it feels great to be back in our own bed!! Tiffany was able to come home last Friday but we had to re-hook up our internet and with all the commotion of coming home that didn't happen till the end of the weekend -- hence the lateness of this update.  Tiffany came home on oxygen and the drug plan explained in the last email. The schedule has been ok except for the long periods of being hooked up to the IV which make for a couple interruptions during the night and not much sleep.  It was probably about 11:30 p.m. that the last delivery guy (for oxygen equipment) left our home Friday night and then Saturday was filled with trying to get reacquainted with our home and settling in after having been gone for almost a month.  Needless to say there were some items that needed to be thrown out in the fridge. Basically the last week has been filled with drugs, CPT (pounding --or beatings== to break up the mucus), and as much sleep as possible.

Today we had an appointment with the CF clinic to see how she is progressing and it was a good visit. Her PFT numbers were up to around 51% which is a great improvement from her last test in the hospital when it was 39%.  Her mom came in to help us last Saturday so it must be her good care that is helping her get better.  Because her numbers are doing well and the therapeutic value of the IVs are running out, they are taking her off the IV drug and oral antibiotic over the next couple of days.  This makes us a little nervous because that is what has been beating down the bugs, but staying on the drugs is not the best option -- we want them to work in the future.  This will allow us to finally be able to sleep through the night so I am looking forward to Friday night's sleep! 

Although Tiffany is progressing, we have learned over the last year that her body is much more prone to allowing these infections to take hold in her body so we must be careful.  Please be in prayer for us specifically about the many decisions that we will be needing to make over the next couple of months about schedule and treatment plans.  We are trusting in our God for His grace and leading! Thank you for all your encouragement and support.

Update 9/21/10

Sorry for taking so long to write an update.  I was able to come home Friday evening.  Wohoo! Boy, it is so nice to be home.  A month feels like forever-it is amazing how much life happens in a month.  It seems like I was just in my own world, in my room-not really tied in to what is happening outside of that room. 

I walked into a whole new home.  While I was in the hospital a group of family and friends completely replaced the flooring in our home.  Where we had carpet through the entire house before, now only two rooms sport carpet.  I have beautiful hardwood floors.  What a blessing!  This is such a labor of love-I don’t feel like “thank you” even begins to scratch the surface.  We are hopeful that this will greatly effect and help my lungs.  Each piece went down with love and I am so thankful for those that invested in me and my health.

So, back to the health front.  I am home and making progress.  This process has been much slower than other exacerbations.  I am still on IV meds 16 hours a day, oral abx and inhaled abx (abx is short for antibiotics).  I am still on oxygen as well, so this is a new frontier for me.  We now have cool tubing all throughout the house. :-) I am nervous about going out in public with oxygen-this happens on Wednesday as I have a Dr’s appt.

DH and I were talking about the reality of where I am.  With where my pft’s are currently and the current exacerbation I have some room to make up.  It has been a tough year-basically, I have been on IV meds 50% of the year.  So, it seems that we have some choices ahead of us.  Would you join us in praying for His direction in these choices?

Hopeful

Hopeful...we have heard the word “home” mentioned and if all remains stable over the next 24 hrs it is likely that I will be headed home sometime tomorrow.  This is the point where we hope this all happens, but “don’t count our chickens before they hatch.”  It is much easier to have low expectations and be excited than have to deal with the emotions of disappointment.

We still have a ways to come and I have my work cut out for me at home the next several weeks.  I am still on oxygen, continuing with IV and oral meds as well as cpt to keep things moving.  However, all of these things seem much more manageable from the homefront.

Progress is being made

We are now ending our 23rd day in the hospital, and I think we are nearing the end of our stay.  Tiffany's main CF doc was back in this last Monday and today, so now we have a plan for getting her home.  At the beginning the goal was that she wouldn't go home until she was off of the oxygen, but that is no longer the determiner of whether she can go home.  

We had another PFT (pulmonary function test) on Monday, and she blew a 39% which is 3% higher than last week and 13% higher from when she first came in to the hospital.  It was not as high as we would have liked to see (her baseline has been between 55-65%), but it is progress and movement in the right direction. Her breathing has continued to improve and her endurance/strength is getting better and better. 

We are shooting for going home the end of this week, so we are making adjustments to the drug plan that will make it easier on us at home. She is also coming to the end of the therapeutic value of a couple of the I.V. drugs so she would need to come off of them anyway. Basically, she is down to one IV drug, an oral antibiotic and going to an inhaled (nebulized) antibiotic. This will make it much easier on us at home with only one IV that currently is four times a day and last for four hours each time. We will see how she does on this plan the next couple of days and if all goes well, then we should be back in our own bed this week.

Our card wall is overflowing, and we are so thankful for all of the support we have received.  We often talk about the verse that tells us to "be strong in the grace of Christ Jesus our Lord" and God continues to strengthen us in our insufficiency.  Thank you for your continued love, prayer, and support. Below is our latest addition of art to our wall from a good friend’s children -- I especially like the dog, it makes me think of Dutch!